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Human Genome To Be Released To Public
Phizzy writes, "According to this CNN Story, President Clinton and Prime Minister Tony Blair have announced that the information gathered in the Human Genome Project will be released to the public. Maybe we can ease our fears about the Genome being controlled by one party. " Good. This is one of the smartest things I've seen this year.
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This doesn't really solve much. A big part of the controversy is the research that is privately funded. Referencing this Wired Article (noted in this earlier /. article), "Celera Genomics president and CEO Craig Venter said Tuesday that his company is willing to continue discussing a collaboration with its longstanding competitor, the international Human Genome Project."
Sure this helps with some of the information it doesn't really address the underlying problem of private companies patenting gene sequences.
"God fights on the side with the best artillery." - Napoleon, Marshal of France - speaking truth to power
The EBI has a list of the various genome databases, which are all freely searchable. You can check up on the progress of the various genome sequencing projects here.
But the larger question is whether the private firms will be forced to relinquish their data. The CNN story says nothing about that.
Someone else mentioned Celera, and quoted a story from Wired's website. Celera is, by far, not the only company pursuing patents on genomic data. Other companies (with thousands more patents applied for) include HGS, Incyte and Athersys. (You can read about their efforts on our Biotech page.)
My proposal: Create a new class of patent with a shorter lifespan that will allow these companies to rightly profit from their research (which has helped the public project immensely). This is rather like Jeff Bezos's proposal for Amazon patents; a new category with fewer years of monopoly so innovators can still benefit from their work and their investments, while the public will still benefit in the not-too-distant future.
Is that fair? I know many here on /. don't buy the notion of compromise (ever), but lots of you are eminently fair-minded. Is my proposal unreasonable?
A. Keiper
The Center for the Study of Technology and Society
Seriously, people. HUGEP isn't run by any goverment, and is a scientific project. Scientific means in that case: made by scientists working at public scientific institutions, like universities and such. Which automatically means that the human genome, once sequenced by HUGEP, will be published in Nature or Science or whatever scientific magazine they choose -- not the sequence per se, but due to publishing policy in these journals it will be accessible via WWW or on demand, as it is the case with all scientific research.
Do you know that if you work at a university, and you find something suspicious (or want to repeat the research, or need it for your research, or are just curious) in a published article, you have a right to demand exact informations from the scientist who published it, including getting the original clones / organisms he used for the research? Of course, if the author works for a public institution. This is the major difference between them and such institutions like CELERA / TIGR.
Let me give you an example. This year an article appeared in Nature on a mutagenesis study of the small bacterium I'm working with. It was performed by associated scientists of one of those big commercial research centers. The article and information published on the web did not give you exact details as to where the reported mutations were placed on the genome, only -- which genes have been knocked out. A professor I know, who also works with these bacteria, wrote to the author to get the details of the study -- and never received any answer. This couldn't happen with an academic institution.
There is a book of a polish writer and Nobel prize winner, Sienkiewicz. It tells the story of the Swedish-Polish war from the XVII century. In one of the scenes, the king of Sweden offers to one of local polish princes that he will give this prince a certain polish teritory, which is occupied by the swedish army, if he agrees to colaborate. The prince answers -- "All right, and I will give you Netherlands".
What I want to say, they are giving away Netherlands: making an offer which is of no value just for the sake of telling it -- because it's not their science and because *of course* it will be released to the public. HELLO! This is not CELERA/ Perkin Elmer, for God's sake!
I will repeat myself, because I consider this matter very important: sequencing projects like HUGEP, payed by academic institutions do publish they data. Take a look at the Mycoplasma pneumoniae homepage -- the group I've been working in sequenced the genome and published it, and you can of course download all the data. Only on-going research projects, which have not yet been published in a scientific journal, are not public - yet.
Speaking of which: publishing the HUGEP data before the project is ready is giving a helpful hand to the privat counterpart of HUGEP - namely, Celera Research. And those are the "patent guys" in this case -- I would really like to see HUGEP ready before Celera is.
Regards,
January
This particular document happens to be related to the US portion of the HGP, but as you can see it has been standard policy, for several years now, to release data as it is generated to public databases. For example, the NCBI Genome Guide, which has both sequence and general information.
DOE-NIH Guidelines for Sharing Data and Resources
At its December 7, 1992, meeting, the DOE-NIH Joint Subcommittee on the Human Genome approved the following sharing guidelines, developed from the DOE draft of September 1991.
The information and resources generated by the Human Genome Project have become substantial, and the interest in having access to them is widespread. It is therefore desirable to have a statement of philosophy concerning the sharing of these resources that can guide investigators who generate the resources as well as those who wish to use them.
A key issue for the Human Genome Project is how to promote and encourage the rapid sharing of materials and data that are produced, especially information that has not yet been published or may never be published in its entirety. Such sharing is essential for progress toward the goals of the program and to avoid unnecessary duplication. It is also desirable to make the fruits of genome research available to the scientific community as a whole as soon as possible to expedite research in other areas.
Although it is the policy of the Human Genome Project to maximize outreach to the scientific community, it is also necessary to give investigators time to verify the accuracy of their data and to gain some scientific advantage from the effort they have invested. Furthermore, in order to assure that novel ideas and inventions are rapidly developed to the benefit of the public, intellectual property protection may be needed for some of the data and materials.
After extensive discussion with the community of genome researchers, the advisors of the NIH and DOE genome programs have determined that consensus is developing around the concept that a 6-month period from the time the data or materials are generated to the time they are made available publicly is a reasonable maximum in almost all cases. More rapid sharing is encouraged.
Whenever possible, data should be deposited in public databases and materials in public repositories. Where appropriate repositories do not exist or are unable to accept the data or materials, investigators should accommodate requests to the extent possible.
The NIH and DOE genome programs have decided to require all applicants expecting to generate significant amounts of genome data or materials to describe in their application how and when they plan to make such data and materials available to the community. Grant solicitations will specify this requirement. These plans in each application will be reviewed in the course of peer review and by staff to assure they are reasonable and in conformity with program philosophy. If a grant is made, the applicant's sharing plans will become a condition of the award and compliance will be reviewed before continuation funding is provided. Progress reports will be asked to address the issue.